Hi, I'm sorry, I only seem to post when I'm in crisis..
Long story short, my shearwave elastography was 1.57cm/s which they said was F0/F1 & they didn't see any evidence of portal hypertension on the doppler ultrasound. Spleen was 9cm.
But in the past few days I've developed 2 obvious spider nevi on my face and I've just noticed that it says !Sm antibody level <0.2 on my blood test results. I don't have auto immune hepatitis so that means cirrhosis doesn't it, because a healthy person wouldn't have any anti smooth muscle antibodies?
The rest of the auto antibody screen was completely clear.
Latest labs were AST 18, ALT 17, GGT 19, platelets 373.
This just isn't making any sense - I'm having symptoms of advanced cirrhosis with tests showing no significant fibrosis. I don't know what to do?
First fibroscan of 4 .7 kpa was after 7 months of abstinence & shearwave was after 11 months - is it possible my liver has 'softened' and a problem isn't being picked up?
Thanks
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nerd1
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With a Fibroscan of 4.7kpa, it is highly unlikely that you have cirrhosis. Your platelets levels would be a dream come true for most people with serious liver problems. If your doctors aren't finding anything that should make you worry, then you have to figure out why you still are worried. Be good to yourself. Be at peace.
Hi, thanks, yes I understand It's just that the symptoms aren't stopping & they haven't seen the spider nevi yet. I also have a uti that won't go away, coated tongue, had an episode of jaundice at the beginning etc. I can't square the symptoms with the test results..
Hi again, I looked up the study you mentioned the other day and in one case the kpa score dropped from something like 22 to 7 after just one year of abstinence, but the person still had cirrhosis. The studies I've read say that stiffness decreases rapidly after abstinence. Do you think something like that could have happened?
Interesting, was cirrhosis biopsy confirmed to him? Anyway fibroscan like any other single test is not some magic wonderful tool that predicts/rules out fibrosis/cirrhosis with 100% probability. I know mamy people would like to see it that way but it is simply not true.
It looks you are ok regarding liver. But I think it will not calm you unfortunately.
About "platelets 373" (upper normal limit) and "spider nevi on my face" please maybe consult it with hematologist. Maybe try to check your blood clot parametrs (INR, Aptt, fibrynogen).
Hi Nerd,
We are sorry to read that you are very worried again.
As you know, no one on the forum can medically guide or advise you. Your fibroscan result is normal.
We would suggest to see your GP for assessment of the spider naevi and your ongoing concerns.
Part of the problem is that you have admitted to a history of drinking, so when you feel unwell, your natural reaction is to assume it is liver related. However, to those of us with liver problems your symptoms do not suggest dire liver disease. Your platelet count is exceedingly healthy. If it were to drop to a much lower level, then this would suggest portal hypertension, something generally associated with cirrhosis. Your fibroscan and platelets do not suggest cirrhosis.
On the ultrasound they would be able to see if you had something wrong with your portal vein. You have been told there is nothing to see there. You should by now be breathing a massive sigh of relief. Your worst fears have not been confirmed.
Spider naevi can be found in various places on the body and they are common on the face amongst people of all ages.
A coated tongue can be a symptom of you sleeping with your mouth open and then this can encourage bacterial overgrowth. The fact that you are so stressed with this all suggests that you probably aren't sleeping well, but when you do, you sleep heavily (through sheer exhaustion) and this can often cause people to sleep with their mouth open. This can happen to anyone.
UTI that won't go away. Have you had treatment for this? Women are very prone to these infections because of the way women are "built", it is not necessarily because they have underlying health issues.
Jaundice. If you feel that this happens again, I would go to the pharmacist and get a professional opinion. You don't need to see the dr for this. Pharmacists are used to seeing this and will be able to say one way or another whether this is the case. However, generally speaking if people are jaundiced, it is unlikely to clear up without treatment.
These symptoms that you are talking about are not suggestive of liver disease, so if I were you, I would stop Googling and ask the dr what they think is going on. I would start first with getting the UTI treated and then drinking plenty of fluids to keep hydrated. I would then focus on getting into good sleep patterns. I know this can be hard when you are so worried, but poor sleep can often lead to other issues.
I know this is very matter of fact, but I was trying to address each of your concerns. There are people at your dr's surgery that will be used to dealing with these sorts of problems and it would be a good idea to ask if someone could go through each of the results to finally put your mind at rest about the liver. Maybe then, you can focus on your health and look into eating well and improving your sleep patterns.
I really hope that you can accept what the many posters are saying to you and grab the rest of your life with both hands. I wish you the very best
Hi, thanks for replying. The uti is not showing up on urine tests (naturally) but I most definitely have one and it responds to uti treatments. My next step for that is to pay for next generation uti testing.
I believe that if I'd gone straight away after having jaundice, it would have been picked up in my bloods. As it was, I didn't have my bloods done until more than 8 weeks later, by which time they were all normal apart from PTT 13.3 seconds.
I understand that in the vast majority of cases the stiffness testing would have ruled out severe fibrosis, but I've been having such extreme symptoms.. I lost more than half my hair before it started growing back & I've been having seizures. I have bad psoriasis on my scalp but autoimmune screen was normal.
It seems unlikely that all of the tests would have missed cirrhosis, but equally it seems unlikely that I could have all of these symptoms without having something wrong with my liver.
Hair loss is not a symptom of liver disease. Many people experience hair loss as a result of the meds. If you lost 50% of your hair, it is likely that you have had "telogen effluvium" although someone would need to see your scalp for sure to see the pattern of loss. This condition can be triggered by stressful events and has also been associated with Covid. Only this week I spoke to someone who is going through hair loss as a result of all the stress of planning a wedding. There are many reasons for this temporary hair loss. Missing key elements from your diet can also contribute.
Just to add that my platelets have been steadily dropping - I've had bloods approx every 3 months & they've gone from 416 to 407 to 396 to 373. This looks like a clear trend?
At this high a level there is nothing to suggest serious liver problems. Platelets are notoriously hard to be 100% accurate on. Sometimes individual platelets can "stick together" making it look as if there are fewer of them. My platelet levels fluctuate all the time. You are reading far too much into these tiny differences. Platelets would need to be much, much lower before anyone would be interested. Please speak to your GP as all we can do is comment on our own experiences. We cannot give you a medical diagnosis.
Nerd1 - On another board I just saw a sad poster describing what her mother looked like and felt like in the last months of her life. There was a picture. Trust me you do not want to see it and for that reason I won't link it although it has been publicly put out there by her family.
From what you write you are not even in the same country, planet or solar system of someone who has any kind of advanced (you used the word advanced) cirrhosis. Please eat healthy, drink nothing bad and eat right and you will be fine.
Of course I am NOT a doctor and only a doctor can tell you anything for sure, so don't feel I am giving any qualified medical advice - I am not.
Thanks kensimmons. I've just made a GP appointment for Friday (earliest available). Thing is, I've told them all this before & no one has any idea what any of it could be other than possibly long covid.
Why does it have to be anything? You have just little minor everyday things. Spider nervi can be caused by a bug bit or the sun or scratching in your sleep and 15 other things. I don't recall any other symptoms (blood test results which are fine but for some reason worry you are not symptoms). Relax and go live a healthy life and you will be fine. Your GP will probably tell you there is nothing wrong with you because in all likelihood there is nothing wrong with you. Calm down.
You are panicking when you have no need to sweetheart. I will say you have anxiety problems and need to speak to your GP. Also please stop googling. You are frightening yourself. I have cirrhosis.
My platelets are 63 and my spleen is 17. Therefore Your results look great in comparison. I am not a Dr but was diagnosed nrly 10 years ago. I wish you all the best. Take care.
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